Courtney Allen once feared she might not live to the age of 30 – and that her dream of becoming a mum would never come true.
The cystic fibrosis sufferer’s illness was rapidly deteriorating and, after she was ruled ineligible for a lung transplant, it seemed she had run out of treatment options – and time.
But today, thanks to a miracle drug trialled by Mater Research, Courtney has made an incredible recovery from her condition and is the doting mother to a baby boy, Aston.
“I’d always lived with the heart-breaking thought that one day I’d be leaving my loved ones behind to pick up the pieces when I died,” Courtney, 33, said.
“Now I have to pinch myself every day to believe that I’m here with my baby. It’s a dream come true – Aston is perfect, he’s the best!”
The Gold Coast mum owes her life, and her new baby, to the drug Trikafta. The revolutionary medication was trialled by a Mater Research team led by Associate Professor Lucy Burr, Mater’s Director of Respiratory and Sleep Medicine.
Cystic fibrosis limits the flow of salt and water through cell membranes, causing mucus to form in the lungs, which triggers persistent infections and irreversible lung damage. Without Trikafta, the average life expectancy for a sufferer is just 37.
Trikafta works by boosting the flow of salt and water in patients’ lungs, vastly improving their lung function and breathing.
Because Courtney carries a rare bacteria, she was ineligible for a lung transplant – which could have prolonged her life – and was also considered ineligible to take part in the Trikafta trial.
With her lung function steadily declining, Courtney’s only hope was that she would survive long enough for the drug to complete its trial and become available on the Pharmaceutical Benefits Scheme in Australia.
But unknown to her, Associate Professor Burr and her team were working behind the scenes for Courtney to be granted ‘compassionate access’ to the medication via a managed access program – only possible due to Mater’s participation in clinical trials.
“Associate Professor Burr surprised me with a call to tell me I could start Trikafta immediately – I’d never had a phone call like that before!” Courtney said.
“At first, my numbers didn’t improve, but I started to feel better. Soon I could run without passing out and for the first time in my life I could take deep breaths. I felt amazing.”
Courtney’s cystic fibrosis had meant it was too dangerous for her to fall pregnant and her elder sister had even offered to be her surrogate if needed, but thanks to her treatment she and partner Marty decided to try for a baby.
Baby Aston was delivered at Mater Mothers’ Hospital in September last year.
Now Courtney is loving being a mum – and she’s not alone. There has been a Trikafta ‘baby boom’ among the female patients treated at Mater Hospital Brisbane’s Cystic Fibrosis Unit.
“We now have at least ten babies where Trikafta was involved!” Associate Professor Burr said.
“These women come into the clinic every six months and show me wedding and baby photos. They are so well – and so happy! It’s totally life changing.
“Previously, a person with cystic fibrosis would be in hospital three to four times a year for two weeks at a time getting antibiotics.
“Trikafta has now increased their life expectancies probably in line with the rest of the population, particularly for kids who start the treatment young and don’t ever experience the same lung damage.
“We currently have 170 patients in the clinic, and 90 per cent of these patients are now on Trikafta and have a new lease of life.
“This life-changing result shows the importance of the clinical trials we conduct through Mater Research.
“Mater Research has been critical to the introduction of new drugs like the one that has helped Courtney and so many others.”
"Thanks to research I have a wonderful future to look forward to,” Courtney said.
